Mannitol was once quite a popular great white hope against PD, but only ever really seemed to benefit perhaps 1 in 5 at best. It did really seem to benefit me though. Given how cheap it is it is always worth a punt (I know big pharma study found no benefit, but we will agree to differ on how believable that is) . Interestingly I got Covid (tested positive at least - I had forgot to take my Vitamin D - though I currently think Cod liver oil may be even better against Covid) a few weeks ago and it had one affect on my sense of taste - I found the taste of wine very chemically and mechanical. I had stopped taking any mannitol for around 5 days whilst being laid low (for about 72 hours) and eating very little with Covid. Subsequently starting up my mannitol consumption (only a level teaspoon a day), did restore my liking for wine within ten days. So my hypothesis that Mannitol can restore Covid/flu damaged sense of taste/smell is still not disproven.
As for my "PD" whilst I did have some interesting symptoms ( loss of sense of taste, handwriting/signature all over the place, an internal tremor, occasional overnight leg stiffness), I have had no progression - so cannot really say I am part of the club. Apart from mannitol, my only other consistent supplement is 20 mg a night of melatonin which I would strongly recommend to everyone (though the level that benefits will be different for many). My diet is good with frequent terrible lapses (chocolate and potato chips)- the only things I avoid are beer as I can see a PD like masking when I drink it. Also biscuits.
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My husband is one of the one in five. It turned his life around. I’m wondering if it works best for non motor symptoms?
As far as the sense of taste is concerned, it didn’t restore that. One of our members said that the mannitol he got from Bulk Supplements in the USA restored his sense of taste,but mannitol sourced elsewhere didn’t. I have tried to get it, but they can’t or won’t supply me here in Australia.
Thanks so much. That is so interesting about coffee...does it have to be caffeinated coffee? Is that what has the effect to help the Mannitol cross the BBB? Also, have you found taking Mannitol all at one time versus dividing up throughout the day to make any difference? I purchased the Mannitol from Sunshine Valley...wonder how that relates to what you mentioned above about Bulk Supplement provider possibly having more of an effect?
I don’t imagine that decaf would do the same job. Some members have broken the dose up. Like most things, it’s trial and error. It certainly should help with the “gas” problem. We haven’t or didn’t play with the dose, as it was very specific in the research at the time,
We bought the mannitol from a wholesale importer of European foods and wine here in Australia. It was from Sosa in Spain and was very cheap compared to the mannitol from elsewhere. Depending where you are, you may be able to buy direct.
The only reason I would buy from Bulk Supplements (and it had to be a particular brand) was because it helped restore the member’s sense of taste…a problem for my husband.
My husband is not taking mannitol currently. It doesn’t appear to be working, so we have taken a break. It worked well for two years, with no increase in symptoms for that period. I may try it again.
Re blood pressure…we have our own machine and on the instructions of his blood pressure specialist, take the reading twice and disregard the first reading. He also has a 24 hr monitor fitted from time to time.
Hi Gwendoline...thanks for the reply and the information. Yeah...I was thinking it was the caffeine that help with the BBB. You mentioned a "gas" problem. was that with taking 1 tbsp of Mannitol? Was it like a side effect?
Oh I see...that suppliers Manntiol was specifically helpful for sense of taste returning.
That is so great it helped to stop increase of symptoms for that time frame. Rotating on and off things I know helps the body with building up tolerance or just getting use to something over time. Another try might be worth it.
I like that idea of doing to BP readings and disregarding the first as that may be more of a stressful reading.
it might be worth starting your mother on a teaspoon first. Gas can happen with any dose. Some members haven’t been able to tolerate it. Maybe breaking up the dose might help. My husband had been taking Aximax for his stomach in the past, so we just reintroduced it. So no problems.
Have you read my post giving the details of the effect mannitol had on him? It seems to work more quickly on non motor symptoms.
It’s all hit and miss, as you will discover.
The main thing is that you have a good movement disorder neurologist who doesn’t mind you trying things. We love ours.
Thanks Gwendoline....that is good confirmation as I was thinking if starting with 1 tsp. I did not see the post you mentioned yet. Were would I find it?
If you want to see the post or posts of someone in particular at other times, hit the member icon at the top of this page, next to other headings Posts etc. and put their name in. Yours being RoseBP, mine gwendolinej.
Thanks Michael...we are going to start it today for her. Is there a specific source you prefer to buy it from. I read somewhere on there that certain sources/places to buy from work better than others.
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